I decided to write about my symptoms and treatment in case anyone is interested in Guillain Barre Syndrome. My hope is to communicate with other people who have had it. This first part is about how I came to be in the hospital.
I went to a doctor in Cincinnati the Wednesday before we were supposed to go on vacation because the pain in my legs had become unbearable and I was worried about traveling in that condition. I expected some pain pills, maybe some exercises to stretch the muscles and told to use heat or see a physical therapist. The last thing I expected was to end up in the hospital with an illness I only heard about from watching House on television.
The pain had started in my shoulders in December and had moved into my legs, especially the calves. Thanks to a chiropractor, my shoulders were getting better, but my legs were getting weaker. I couldn't run any longer, it hurt to go up stairs or put on my shoes and socks. Then, around the beginning of March, my calves started to hurt all the time. It was like having shin splints, except it had been weeks since I had been able to run.
I still thought it was part of my back and shoulder problems-I must have been putting strain on my legs because of the pain, I reasoned. On Wednesday, March 16th, the pain was so bad I made an appoint with a doctor near where I work. The Physician's assistant looked me over, head my symptoms and ordered X-Rays and some blood work. I understood the X-Rays, but what was the blood work for? I went back to her office after the labs were done and asked her to explain why to me. The progressive nature of my weakness made her think it might be more than strain. The blood work was to see if I had a chronic illness such as cancer or muscular dystrophy.
I heard from Dr. Phlum on Thursday; there were no bulging discs or indicators for cancer or muscular dystrophy. He was going to try to arrange a visit with a neurologist for me. That was going to be their Friday morning priority.
When I told him we were leaving first thing Tuesday morning for vacation, he said, "You might want to change your plans."
His office called me the next day and told me that there were no open neurology appointments until May, so I should go to a local emergency room and have them call him. The closest was Jewish Hospital, just a few minutes from where I work.
That was Friday, March 21. I got to the emergency room at Jewish hospital at around 3pm.
At 5 o'clock, they did a spinal tap on me in radiology. It was a little uncomfortable, but the neat thing was I could watch the needle go into my spine on the monitor. They wouldn't let me have a copy of it. The result was elevated protein count (400, ten times greater than normal) that indicated Guillain-Barre Syndrome.
They ordered a MRI, a consult with a neurologist and admitted me to the hospital. During this process, they slipped a tube in my arm and a bracelet on my wrist that said "Fall Risk." They also put me in a room that had a bed alarm and told me I couldn't get out of it unless someone was there with me. They also hooked me up to a heart monitor. I was starting to realize this was more serious than I thought.
I spent a mostly sleepless first night in room 4308. The medication they gave me for my pain (I forget what it was) didn't work. They wouldn't give me anything to help me sleep because I needed to be alert for my MRI, which was probably going to be first thing in the morning. I took ibuprofen at home to help with the pain, but doctor, whom I not spoken to or met, would not prescribe it.
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